My neurologists didn't have a bunch of good news for my parents on the day they declared my diagnosis of Spinal Muscular Atrophy when I was 18 months of age. They also didn't have a lot of insight into how my disability would progress. Would it take months or years for me to stop crawling, climbing, and holding onto the edges of furniture to steady myself as I took steps? Would it take months or years before I ended up in a manual wheelchair full-time? When would I use a power wheelchair? How would I fight colds and congestion without the ability to take a deep breath? Would I look "normal"? Would I be able to attend school or work full-time? Would I fall in love? Would I need assistance with getting dressed, doing my hair in the mornings, and going to the bathroom?
Going to the bathroom
Taking a piss has proven to be one of the most disabling aspects of my disability, if not the most disabling part. A close friend once jokingly told me that her disabled friends would categorize the severity of one's diagnosis not by symptoms, but by the ability to pee independently or not. If you could pee on your own, you were some sort of "Super Crip" with super pee powers. In fact, I often kidded with friends when asked what my superpower would be if I could have one. Invisible cloak? Nah. Flying? Nah. My response: the ability to pee out my elbows. Not only would I be able to relieve myself easily, my elbows couldn't reach my mouth, and I could use my power as self defense. The support group for adults with neuromuscular disabilities that I belong to on Facebook discusses the ins and outs of negotiating "pee math" (a concept coined by one of our members) on a daily basis, which I'll go into more detail about soon. Peeing rules our world; it affects how we work, socialize, have sex, travel, eat, drink, and sleep. It affects our bank accounts. And finally, it affects our health.
Thanks to Texas and its wacky ideas of social services for the disabled, I am granted the privilege to pee three times a day. Once at approximately 6:55 am, 1:25 pm, and at 9:50 pm. My Personal Care Attendant (PCA), paid approximately $9.75 per hour by the State, meets me at my house, transfers me to the toilet, helps me shimmy my pants down. I pee. She helps me wipe my ass (on my strong days, I do the wiping). She helps me shimmy my pants back up and then she transfers me back to my wheelchair. It takes about 20-40 minutes each time leaving me with the leftover time to accomplish all the other stuff I need to accomplish while surviving without muscles.
Did I mention that a lawmaker, who can use the bathroom as much as he or she wants, allocates the number of times I get to pee per day? This is where the great disconnect between government and humanity happens and this, my friends, is where the Pee Math comes in.
Pee Math 101
For me, the more ounces I drink, the faster it is that I'll process those ounces in my system. If I have to wait approximately eight hours between taking a piss, I'll need to carefully plan how much I drink and when I drink. I rarely drink more than 20 ounces per day and when I drink, I strategically plan to drink about an hour before my help arrives so the fluid has time to move on down the yellow brick ureters. Limiting my intake works, but most days, as the minutes creep ahead, I start feeling the urge to go way before I can get relief.
As I write this essay, I have to pee. The pressure is distracting. It's hard to listen to people who sit down in my office and seek quality advice when my bladder is full. It's painful. I look at the clock over and over again. I sometimes call to check on my PCAs to see if they are on their way. I remember as a child, people thought I was a little odd because I'd sit and wiggle/dance to no music. I'd sway side to side like Stevie Wonder. No, this wasn't a tick related to my disability; this was me curbing that need to pee. Sometimes if you shake, shake, shake your booty the urge lessens.
On the rare days that I miscalculate my pee math, I have to pay someone out-of-pocket to come meet me and help me pee. Usually, because of my luck, those days seem to never be the days when I have nothing going on. Usually, they involve some kind of social interaction that I'm anxious about. Maybe it's a dinner date with a new friend, a job interview, or a doctor's appointment. I'll try to control the amount of water I drink, but on those days, every ounce goes through me like a shot.
I'm proud to say that I've only had one "accident" in my 39 years. My one and only accident occurred in second grade. I was waiting for my teacher to finish her math lesson so she could meet me in the bathroom and help me get on the toilet, but unfortunately for me, the kid in the front of the room was as dumb as rocks and kept asking stupid questions (this is where I first learned that some questions are actually stupid questions). I remember I wore this cute little dress and leotards. The warm urine slowly filled my leotards as tears and snot fell down my face. It was humiliating and I vowed from that point on to practice a different kind of math. By the time I finished elementary school, I was the Albert Einstein of Pee Math, able to hold my pee for up to 16 hours.
Announcing my retirement
This year, after going through a handful of days where the intake of fluid times the hours between scheduled assistance becomes accelerated at an unusual rate, I decided to retire from my side job of Pee Math Accountant and Auditor. 39 years of dehydrating myself and sacrificing so many special moments of my life for the sake of draining my bladder has taken its toll. I'm done. In fact, I should have been done years and years ago, but unfortunately I didn't realize that there was a better way until I joined a community of adults with neuromuscular disabilities who had found a way to pee free.
By the way, it upsets me greatly that I didn't know about these urination alternatives earlier in life, which confirms my theory that people who can pee without assistance should not be the people counseling, advising, treating people with my disability. Just like the my Texas lawmakers, the able-peeing doctors and personnel who ran the Muscular Dystrophy Association clinics I went to growing up don't really get pee math. They assume that our PCA care magically appears - poof! That we don't break our legs getting hastily transferred onto the toilet by someone who doesn't have the strength to lift us. They assume that we don't have social lives; or wouldn't like to take a trip on a plane for longer than a few hours (planes' bathrooms aren't accessible); that we don't need or want to pee after having sex to avoid infection. Bitter rant over. Point is - I found an alternative and I'm officially breaking from the chains of urination slavery and getting a Supra Pubic Catheter (SPC). I'm naming my SPC and I'm naming it "Peetee".
Tell me more about Peetee
My SPC or Peetee is scheduled to arrive on Friday, July 8th at noon. Basically, it's a tube that will be inserted into my bladder through a stoma (open hole) created just below my bellybutton and above my pubic bone. It won't get in the way of my lady parts and the catheter will tap my bladder like a keg. I will be able to pee normally out my urethra, but with Peetee, I'll also be able to drain my bladder through the tap into a bag or straight from the tube into the toilet. The surgery is outpatient. I should be in and out of the hospital over a couple of hours. My urologist says that I should be back to work on by Monday. I'll need to change out the tube on a monthly basis for the rest of my life and I'll need to take really great care of it to prevent infection. Oh, and if I hate Peetee, it's completely reversible within an hour's time. Peetee is not a perfect solution, but it will allow me for once in my life to stay hydrated without constant interruption.
Am I nervous about surgery? Yes. Am I frustrated that I have to go through the risks of the surgery and deal with a tube hanging out of me for the rest of my life because Texas hates disabled people? Yes. Am I sad that my bikini bod will be marred by a plastic tube sticking out of it? Whatever. Am I excited to drink more than 20 ounces of fluid a day? Yes. Am I excited about a level of independence and freedom that I've never known? Absolutely.
In the coming days, weeks, and months, I intend to write more about my quest to pee free for those who are interested in learning more about this journey and to hopefully inspire other people to consider taking their own journey. I realize peeing isn't sexy to most (unless you're R Kelly), but for me and millions of people with disabilities, peeing is a huge challenge. I want to explore this as thoroughly and as candidly as possible with the goal to educate and enlighten. Thanks for reading!
Image Description: A small plastic cup filled about 2/3 full with urine. It has a lid on it.